Help! Fainting Even When Vitals Appear Normal???

[IceLizard]

Hi you all,

This is my 1st time posting on these forums, but I have been having trouble with dysautonomia for most of my life. I was diagnosed with Ehlers Danlos type III and it is believed that the dysautonomia is a result of that. My tilt table test shows that my heart rate increases to 150 bpm when upright and then my blood pressure drops suddenly and drastically causing me to faint. Then I shake as if I am having a seizure.

Sometimes, though, I will have episodes when everything appears normal, or is it that the blood pressure drops so fast people miss catching it? My cardioloist thinks I should see a neurologist to rule out other problems. When I am symptomatic I also have extreme sleepiness, trouble walking/ wobbly legs, confusion, and what I have learned is called essential tremor of the hands and arms. If I lay down and take a nap these symptoms resolve themselves.

Thanks in advance for any advice or insight

[corina]

Hi IceLizard, welcome to the forum!

[lejones1]

Hi and welcome! First of all, I definitely think you should definitely see a neurologist to rule out other causes - it's always good to be a careful and even if it is just fainting you may get a different perspective on it from a neuro.

I do have a possible explanation though. I have the opposite pattern - I can get extremely wacky vitals (like 60/40, 50/30 sustained) and feel absolutely horrible but still not faint. A neuro explained that that was because machines only measure blood pressure at one point in our body, usually the arm, while fainting is dependent on blood in the brain, so somehow my body is compensating for the low BP and still getting enough blood to my brain to keep me conscious. I wonder if it's possible for you to have the opposite problem - even with a seemingly normal arm BP, you still may not be getting enough blood to your brain. Maybe something to discuss with a doctor! Good luck figuring it out!

[IceLizard]

Thanks guys for the welcome. I was wondering if it were possible that blood flow might still be interrupted to my brain, even when it registers fine in the arm. Is there some sort of imaging for this? I am sort of afraid to see a neurologist because over the years I have learned to be traumatized by doctor visits (before I was properly diagnosed). Plus, I'd have to travel to see a good one; there aren't that many in Northern Louisiana. So, I am trying to gather information to see if I really need to see one first. Nice to hear from you

[AshleyPooh]

Hi IceLizard, welcome to the forum.

I sort of have similar experience i think, and I will tell you why. Before my tilt table test, I thought I was going nuts. The reason was that I would check my blood pressure, and it would be super low. I'd check it literally a minute after, and it would be just fine. I'd still feel terrible, but my bp would look normal. My blood pressure was what you'd call a ' roller coaster' issue, it kept diving down then popping back up to normal, then back down, then back up. It could look perfectly normal, depending on when you take it. I used to check mine multiple times in a row, because I would get drastically different readings each time I think this was my body's way of fighting the drops in bp, by boosting heart rate and raising the bp back up, but never fully able to keep it up.

Has your doctor talked about putting you on a blood pressure medication? I'm on midodrine, just started it on the 2nd, and so far it's been keeping my blood pressure pretty steady, and I can tell too, because I don't feel so out of breath and fatigued and stupid like I did all the time before the meds.

I would definitely get looked at by a neurologist, and if they say it's just the dysautonomia, maybe ask about what a blood pressure medication could do for you

[Katybug]

My POTS neuro has equipment on his ttt that takes a constant measurement of BP and HR but my first ttt was performed at a facility that could only take periodic BP and HR. We were able to see sudden drops and rebounds in my BP that weren't seen on my original tilt. He said that my BP was fluctuating so quickly that regular equipment wouldn't have picked it up. Literally I would dip really low but then within seconds be back to a normal BP. My HR went up and stayed up on both tilts so no fluctuation there. But, if I get presyncopal and lay down my HR can go from the 120s to 80s in just a few seconds of laying down but my symptoms take much longer to resolve.

[Guest Alex]

Hi IceLizzard,

welcome to our community.

I believe your question has been addressed on the forum in the past, so it may be worth browsing around a bit.

Here is my understanding of fainting with normal BP/HR. You can have normal vitals, yet experience cerebral hypoperfusion (insufficient blood flow/oxygenation to the brain). One of the causes of this is an impaired blood flow through your carotid artery when assuming upright position. Also, over stimulation of the sympathetic branch of your ANS can also constrict the blood vessels feeding the brain, thus depriving it of oxygen, thus the faint feeling.

During the TTT your BP and HR should be constantly monitored, and your BP in particular is measured beat by beat (they will detect the smallest changes in BP). At the same time, a doppler (ultrasound) study of your cerebral blood flow can be performed during the ttt (see article below) in order to determine how much oxygen your brain is getting during orthostatic stress. See if you can convince your dr you need one of these, and most importantly if one such test is available and/or advisable for you. I haven't read about something like this but I'm pretty sure that it's possible to measure the blood flow in your carotid artery when you're standing - a carotid doppler or ultrasound is routinely performed while supine, but in your case it may be worth performing a standing one ...it may give the drs some ideas as to what goes on.

http://circ.ahajournals.org/content/104/22/2694.full.pdf+html

Cerebral Vasoconstriction in Vasovagal Syncope: Any Link With Symptoms? A Transcranial Doppler Study

I hope this helps.

Best of luck.

Alex

[IceLizard]

Thanks AshleyPooh, Katybug, and Alex! This is very helpful. I'll also take a look at past postings and see what I can find.